“ I am a survivor, even though I did not have cancer myself. Children who are labeled “survivors” face a lifetime of challenges due to the antiquated drugs that are being used to treat many of the forms of cancer.
Jonathan Agin is the first mAss-Kicking Parent that we have highlighted! Jonathan was thrust into the world of children’s brain tumor advocacy when his daughter, Alexis, was diagnosed with a diffuse intrinsic pontine glioma (DIPG). In 2009 he and his wife, Neely, created the Race Against the Odds, A Team Alexis 5k for Pediatric Brain Cancer Research. Since that first race, the Race Against the Odds has transformed into the umbrella race for the National Race Against the Odds. In four short years, over $300,000.00 was raised for pediatric brain tumor research. We were very honored to connect with Jonathan and ask him a few questions
mK: Thanks for doing this Jonathan! What is your relationship to tumors/cancer:
JA: My daughter Alexis was diagnosed with an inoperable brain tumor (DIPG) in April 2008 and battled heroically for thirty-three months. She was 27 months old when she was diagnosed and passed away two weeks shy of her fifth birthday.
mK: How did you get stated in Pediatric Cancer Advocacy? What do you do?
JA: I began by writing in Alexis’ Caringbridge journal. I began by questioning the ridiculously low amount of money that is spent on the federal level for childhood cancer research. Through writing in Alexis’ journal, and then through the pieces I’ve had published in the Huffington Post as well as Cancer Knowledge Network, my advocacy platform has grown to where it is a significant part of my life now.
mK: What motivates you?
JA: My family motivates me. My wife, my children and of course my daughter Alexis. I’m also very motivated by the thought that too many kids are being diagnosed with cancer. Too many parents are losing children. We need to shift the manner in which we attack the problem of childhood cancer.
mK: Who is your personal hero or are your heroes?
JA Easy question to answer; my daughter Alexis. For thirty-three months, she never complained, she never questioned any of the doctor visits, the hospitals, the medicines or the entire journey. She took every day, lived life with such spirit and demonstrated how to achieve perspective. To me, this is what a hero is and always will be.
mK: What makes you laugh, cry, angry?
JA: The entire journey of childhood cancer provides so many different emotions. Losing Alexis has been the biggest formative experience of my life. All at once there is anger and sadness combined. By the same token, I maintain a very “stupid” sense of humor. These days, I try and take any and all opportunities for distraction.
mK: Laughter is a very important emotion in recovery process in dissolving anger and sadness … What would you say is the most interesting thing you’ve ever done?
JA: I have been fortunate to enjoy many different interesting and amazing experiences in my life. Two come to mind though. The first was when my wife and I were getting certified for scuba diving and we did two of our certification dives on the Great Barrier Reef. We were on our honeymoon and it was simply as amazing as you can imagine. Taking an equal spot in my mind is another time under the water when I did a shark dive. No cages, just out in the open water diving with reef sharks.
mK: Based on what you’ve observed, what is the toughest challenge a survivor faces?
JA: This is a hard question to answer. I am a survivor, even though I did not have cancer myself. Children who are labeled “survivors” face a lifetime of challenges due to the antiquated drugs that are being used to treat many of the forms of cancer. These drugs leave kids permanently impaired and in many instances significantly decrease the life expectancy of these children. This is something that most people outside of the childhood cancer community are not familiar with.
mK: What is your guilty pleasure?
JA: Endurance sports. I started running marathons in 2001 and finished 11. I have now transitioned to doing triathlons. I use the training as a form of therapy. It is cathartic to simply be within my own thoughts.
mK: We like to ask questions that make you think… If you could have COMPLETE knowledge of any thing what would it be and why?
JA: I want to know for sure if there is an afterlife. Knowing this will give me peace and comfort that I will see Alexis and my sister again. That really sums things up. Everything else in life can be enjoyed through the perspectives gained by having endured this journey.
mK: What are you up to now?
JA: I’m working on some new childhood cancer advocacy initiatives that I hope will significantly impact the manner in which childhood cancer is perceived on the federal level. As a community, we need to learn from some of the other smaller disease populations as well as the larger ones and implement the same strategies for greater gains. Stay tuned…
mK: Cool. Any advice for people or loved ones that get daunting diagnoses?
JA: Rely upon as many resources that are available to you as possible. In the childhood cancer community, there are plenty of foundations and individuals out there who are willing to assist you in navigating this new and horrible world that you and your child now face.
mK: Tell us something about yourself that people probably didn’t know… anything.
JA: I decided to go to law school because I wanted to be a politician. Who knows…
mK: Any parting words for all the mAss Kickers?
JA: I fight because of Alexis. I fight because she cannot anymore. And I continue to fight because today, tomorrow and the next day more kids will be diagnosed with cancer.
Jonathan Agin: loving father, endurance sports enthusiast, scuba diver, once-aspiring politician, and driven childhood brain tumor advocate. Check out Race Against The Odds to support the fight against pediatric brain tumors!